NY AIDS Tests Violate Privacy, Mis-direct Priorities, Activists Say

by Shreema Mehta

Civil libertarians and medical-privacy advocates are joining AIDS groups in pushing New York governments to alter controversial testing policies and refocus their priorities on stopping and caring for people with HIV.

May 26, 2006 –
AIDS activists in New York are demanding the state end "emergency" regulations that give it increased power to collect data from people tested for HIV in New York City.

The regulations, enforced last June and renewed four times without public comment, permit doctors and other health care providers to conduct multiple HIV tests without obtaining the written consent of the patient each time.

While state officials work to expand the changes and make them permanent, opponents say the focus on testing is a misplaced effort that fails to stem the spread of HIV. Patient advocates and civil liberties groups have banded together to oppose the emergency rules, saying they violate the law. The HIV Law Project, South Brooklyn Legal Services and the New York Civil Liberties Union (NYCLU) are threatening the New York State Department of Health with a lawsuit if the new regulations are not rescinded.

Current New York State law holds that doctors and treatment centers must first discuss the nature and benefits of the HIV test, provide information about preventing HIV transmission, and tell patients existing legal protections against discrimination they may experience if they test positive. Testers must also obtain written consent before each test and report the presence of HIV or diagnosis of AIDS, along with names of HIV-positive people, to the local health commissioner.

Researchers and AIDS groups have since widely dismissed the danger of the superbug.

But almost a year ago, the state issued an emergency amendment in response to what it said was a drug-resistant "superbug" strain of HIV that infected a man in New York City last February and quickly progressed to AIDS. The notice of emergency rulemaking said the incident necessitated the state Department of Health to collect more HIV data to better catalogue "emergent major threats."

Under the emergency regulations, the state Department of Health can collect other types of medical data, such as viral and lymphocyte counts to determine how effectively the body is fighting the disease. And it can apply consent given for the first test to future tests.

Researchers and AIDS groups have since widely dismissed the danger of the superbug.

The city itself announced last March that its investigation did not yield a source of the strain; nor could it determine who else might have contracted it.

Nevertheless, the New York State Department of Health has continued to enforce the emergency rule for almost a year without public input and is just now finalizing a proposal to make the changes permanent. That proposal will be open for public comment.

Cynthia Knox, a director of the HIV Law Project, said that in renewing the emergency regulations, the state violated administrative law, which requires a government agency to gather public comment before proposing a policy change.

"Emergency regulations are supposed to be just that," Knox said. "After the initial regulation expires, they should be opening it up for comment. And here, what the [state Health Department] did was completely subvert the ability for public comment."

â€œEmergency regulations are supposed to be just that.â€

Elizabeth Benjamin of the New York Civil Liberties Union said the emergency regulations violate patientsâ€™ privacy rights guaranteed under New York law by allowing the state to collect more detailed data beyond the presence of HIV and AIDS, including further medical data such as the progression of the virus and its reaction to treatment.

The newly revised consent forms neither specify who will be handling patientsâ€™ lab results nor provide test subjects a prerogative to control the extent to which their data is shared or used.

"Patients have a right to know exactly who has their medical information," Benjamin argued.

City and state officials insist the emergency rules do facilitate the testing process and will lead to more diagnoses of HIV and AIDS in a city with one of the highest rates of the virus.

Spokesman Jeffrey Hammond said the New York State Department of Health (DOH) has not yet responded to the possible lawsuit, but he told The NewStandard that the agency "received the letter from the NYCLU and [is] reviewing their concerns."

Of further concern to advocates for HIV and AIDS patients is a proposal put forth in March by New York City Department of Health Commissioner Tom Frieden. The commissioner is pushing to increase the amount of information doctors and the city Health Department can share with each other without a patientâ€™s consent. Frieden is also proposing to eliminate requirements to counsel people taking HIV tests. He also wants do away with regulations requiring written consent for the testing.

The commissioner is pushing to increase the amount of information doctors and the city Health Department can share with each other without a patientâ€™s consent.

Charles King, president of Housing Works, a local group that provides housing and other services for people living with HIV and AIDS, opposes Friedenâ€™s proposal, especially his call to end precounseling to streamline the testing process.

"Finding out that I was HIV positive was a traumatic experience, but I was at a point where I know all the facts and details," King said. But, he added, precounseling is crucial "when youâ€™re talking about people who donâ€™t have access to that information."

Drew De Los Reyes, who conducts HIV tests at the Gay Menâ€™s Health Crisis in Manhattan, said precounseling is an invaluable service provided to people seeking testing. "We received feedback from clients about how [in the counseling session] they shared a lot of information theyâ€™ve never shared with anyone in their lives," he told TNS.

While the New York City Department of Health argues that "physicians will be more likely to incorporate testing into their regular medical routine and more people will know their HIV status" with merely oral consent, AIDS activists believe this approach is out of touch.

"Thereâ€™s no strategy within [Friedenâ€™s] proposal to get doctors to offer the test," said Kacie Winsor, director of state and local affairs at the advocacy group New York AIDS Coalition. "If [doctors] donâ€™t want to have the conversation, theyâ€™re not going to have it, because a written form has been removed," Windser speculated.

Mel Stevens, a nurse and former member of the AIDS activist group Act Up, which has chapters in New York and around the world, said that the emergency regulations and Friedenâ€™s proposals are insensitive to people living with heavily stigmatized HIV and AIDS who closely guard their disease from the public eye.

Stevens, who joined Act Up in 1993 when he lost his partner to AIDS, said that even current laws already require a high amount of personal disclosure that intimidates HIV-positive or at-risk people who keep their status secret.

"Once youâ€™re tested positive, your name goes to a data bank and youâ€™re identified," he said. "The very fact that the state can ask about sexual partners can be very scary for someone recently diagnosed."

In giving officials the ability to talk to doctors about individual patientsâ€™ medical conditions, as the city seeks to do, Stevens said the government is wrongly intervening in the guarded relationship between infected people and their doctors, and will ultimately drive away people concerned about confidentiality.

While the government seeks more-extensive permanent powers, advocates who work with the HIV-positive population or who live with the virus themselves say the emphasis on testing is misguided.

"You canâ€™t just look at the testing part," Knox, of the Law Project, told TNS. "We have to look at what kind of health and support services people are receiving when they get testedâ€¦. I think with regard to the proposals from the DOH, theyâ€™re focusing too much on the testing and not enough on community-based medical services."

King said the city should put more resources into prevention. "I think one good thing that Frieden has done is make condoms more available," he said. "Theyâ€™re still not accessible in our school system. Weâ€™re not going out to every venue where someone can hook up for sex."

For Stevens, increased testing does nothing to address the heart of the struggle in fighting and treating HIV.

"Weâ€™ll find out whoâ€™s sick by mandatory testing, but the drugs are so expensive," he said. "Whoâ€™s going to pay for thatâ€¦ if you donâ€™t have health insurance?"